RE: just another irritating thing with drs!

[Guest guest]

OMG , I am with you dear! They wont admit it because they obviously

" slipped " somewhere and caused your problem and are afraid of a lawsuit. I am so

very very sorry. Since we are venting here....my turn. Just to recap, my Long

term disability insurance which has been supporting me for 3 years forced me to

apply for SS. When SS turned me down the second time (due to lack of proper

documentation of my condition because doctors dont understand it and I cant find

a specialist that will see me without health insurance) the LTD dropped me

leaving me with no income and no way to work. I am awaiting a SS hearing which

may take up to a year and meanwhile I can appeal the LTD decision if I feel I

have adequate new info to make them change their mind. I contacted Dr. Bolognese

(the guy who did that video on OTCS) and he said the nearest specialist to me is

in CO (Dr. Oro') so I called them and he agreed to review my stuff and that they

were scheduling in late

Feb 09. I called Angel Flight and set up free air transportation and was

eagerly looking forward to seeing Dr. Oro so that I not only would have a chance

at appealing but also to get some help for this DAMN pain. Dr. Oro's office

called night before last and said there is nothing they can do to help me. They

cant prove OTCS without surgery, I dont have insurance, no surgery, no

proof...find a pain management clinic.

OMFG!!! I am soooooo tired of hitting my head on wall after wall after wall.. If

they could just trade bodies with me for 30 min they would change their minds,

no question. I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person. All of this

is really wearing on me and I finally gave in and saw a Psych (now Dr's will

really write it off as all in my head) but between the pain and the losing

everything I own, I was really beginning to think it might be better just to not

wake up one day. So, now I have two lovely new meds that make me even more

addled and whenever I see a doc he will think I am nuts even more than they

already did. I contacted the spina bifida association and they wrote a very

empathic response and said that even full blown SB pts have trouble getting

SSDI. What the hell is their problem? Sorry.....I am just so frustrated. Ok, I

have vented enough...sorry folks

but I know many of you can relate. 

Subject: just another irritating thing with drs!

To: tetheredspinalcord

Date: Friday, December 5, 2008, 3:10 AM

Hello to all,as I sit and read your posts and see where many of u as

i have grown frustrated with drs reactions to our problems I have to

add a little something or maybe just vent.Which ever here goes-I had

my tc surgery in jan 2004 much complicated and was told I would be

fine as many of the rest of you I am sure.Later on to find that I

also have syringomyelia and arachnoitis but here is my beef-I am

always told that my not being able to use/lift my arms has nothing to

do with my lower lumbar right?well then how come before they opened

my spine and went into my spinal cord I could move my foot and lift

my arms??and now I can't raise eyebrows or lip/mouth on rt side?but

have been told it sounds like strokes but the brain mri's look

fine...each episode of the paralysed usually on rt side is getting

worse and i give up with the docs!I do know this-before I had surg I

could use my foot and I could lift my arms and they won't even

consider the thought that the lower lumbar has nothing to do with

your upper extremities! Go figure!!Anyway maybe some of u will find

your answeres I now just place my faith in the man upstairs and try

to keep my pain under control with my local dr who does understand

thank God the pain anyway!and now hope u all have a goodnite and

forgive me if I sound synical....Blessing s to you all,

on oh maybe one day there will be drs that will listen to us

and forget what the textbooks say!and just listen maybe just a lil to

us we can't all be crazy can we???

[Guest guest]

" I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person.

All of this is really wearing on me and I finally gave in and saw a

Psych (now Dr's will really write it off as all in my head) but

between the pain and the losing everything I own, I was really

beginning to think it might be better just to not wake up one day.

So, now I have two lovely new meds that make me even more addled and

whenever I see a doc he will think I am nuts even more than they

already did. "

You will NOT be seen as a drug seeking crazy person if you chose to

take narcotic pain medication to ease/treat your current neuropathy.

That message my dear friend is " in your head " and it may feel that

way but it surely doesn't mean that you'll be perceived as an addict.

There are many people who chose narcotic pain med drug therapy to

treat their chronic pain condition. And I'm happy to hear you now

have someone neutral to " hear you out and listen " " and have a safe

place to vent. " This too DOES NOT mean you're crazy -- and I am so

deeply sorry to hear the neurosurgeon, Dr. Oro stated he cannot help

you. Did you try calling back and speaking with him directly to fnd

out why? It seems quite strange one minute he's happy to oblige and

now he's given you the door. Hmmmm. I have a feeling it may be due to

the SSA and him not wanting to involve himself in federal business. I

wouldn't give up on him entirely.

Am here and listening .. hoping this finds you feeling a bit better

about things. Hugs.

>

>

> Subject: just another irritating thing with drs!

> To: tetheredspinalcord

> Date: Friday, December 5, 2008, 3:10 AM

>

>

>

>

>

>

> Hello to all,as I sit and read your posts and see where many of u

as

> i have grown frustrated with drs reactions to our problems I have

to

> add a little something or maybe just vent.Which ever here goes-I

had

> my tc surgery in jan 2004 much complicated and was told I would be

> fine as many of the rest of you I am sure.Later on to find that I

> also have syringomyelia and arachnoitis but here is my beef-I am

> always told that my not being able to use/lift my arms has nothing

to

> do with my lower lumbar right?well then how come before they opened

> my spine and went into my spinal cord I could move my foot and lift

> my arms??and now I can't raise eyebrows or lip/mouth on rt side?but

> have been told it sounds like strokes but the brain mri's look

> fine...each episode of the paralysed usually on rt side is getting

> worse and i give up with the docs!I do know this-before I had surg

I

> could use my foot and I could lift my arms and they won't even

> consider the thought that the lower lumbar has nothing to do with

> your upper extremities! Go figure!!Anyway maybe some of u will find

> your answeres I now just place my faith in the man upstairs and try

> to keep my pain under control with my local dr who does understand

> thank God the pain anyway!and now hope u all have a goodnite and

> forgive me if I sound synical....Blessing s to you all,

> on oh maybe one day there will be drs that will listen to us

> and forget what the textbooks say!and just listen maybe just a lil

to

> us we can't all be crazy can we???

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks After reading my message again I can see I was a bit miffed LOL  Well,

at this point I really dont care what they think anyway. I am tired of hurting.

I am thinking of adding Baclofen for the spasms....is it really sedating? I

think Dr. Oro's point is that if I cant have surgery there is nothing he can do

and it sounds like he is unwilling to put his name down on fed biz based on

symptoms. I am going through the free clinic here and trying to get a referral

to the Spina Bifida program at OU. Maybe at least they can get me into pain

management. Now it is just a waiting game. Wish I had time to wait...am calling

a Realtor about putting my house on the market tomorrow    

Subject: Re: just another irritating thing with drs!

To: tetheredspinalcord

Date: Sunday, December 7, 2008, 9:05 PM

" I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person.

All of this is really wearing on me and I finally gave in and saw a

Psych (now Dr's will really write it off as all in my head) but

between the pain and the losing everything I own, I was really

beginning to think it might be better just to not wake up one day.

So, now I have two lovely new meds that make me even more addled and

whenever I see a doc he will think I am nuts even more than they

already did. "

You will NOT be seen as a drug seeking crazy person if you chose to

take narcotic pain medication to ease/treat your current neuropathy.

That message my dear friend is " in your head " and it may feel that

way but it surely doesn't mean that you'll be perceived as an addict.

There are many people who chose narcotic pain med drug therapy to

treat their chronic pain condition. And I'm happy to hear you now

have someone neutral to " hear you out and listen " " and have a safe

place to vent. " This too DOES NOT mean you're crazy -- and I am so

deeply sorry to hear the neurosurgeon, Dr. Oro stated he cannot help

you. Did you try calling back and speaking with him directly to fnd

out why? It seems quite strange one minute he's happy to oblige and

now he's given you the door. Hmmmm. I have a feeling it may be due to

the SSA and him not wanting to involve himself in federal business. I

wouldn't give up on him entirely.

Am here and listening .. hoping this finds you feeling a bit better

about things. Hugs.

>

>

> Subject: just another irritating thing with drs!

> To: tetheredspinalcord@ yahoogroups. com

> Date: Friday, December 5, 2008, 3:10 AM

>

>

>

>

>

>

> Hello to all,as I sit and read your posts and see where many of u

as

> i have grown frustrated with drs reactions to our problems I have

to

> add a little something or maybe just vent.Which ever here goes-I

had

> my tc surgery in jan 2004 much complicated and was told I would be

> fine as many of the rest of you I am sure.Later on to find that I

> also have syringomyelia and arachnoitis but here is my beef-I am

> always told that my not being able to use/lift my arms has nothing

to

> do with my lower lumbar right?well then how come before they opened

> my spine and went into my spinal cord I could move my foot and lift

> my arms??and now I can't raise eyebrows or lip/mouth on rt side?but

> have been told it sounds like strokes but the brain mri's look

> fine...each episode of the paralysed usually on rt side is getting

> worse and i give up with the docs!I do know this-before I had surg

I

> could use my foot and I could lift my arms and they won't even

> consider the thought that the lower lumbar has nothing to do with

> your upper extremities! Go figure!!Anyway maybe some of u will find

> your answeres I now just place my faith in the man upstairs and try

> to keep my pain under control with my local dr who does understand

> thank God the pain anyway!and now hope u all have a goodnite and

> forgive me if I sound synical....Blessing s to you all,

> on oh maybe one day there will be drs that will listen to us

> and forget what the textbooks say!and just listen maybe just a lil

to

> us we can't all be crazy can we???

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

I hope you have good luck getting into the SB program. Even if they don't

accept you or only treat children and are unwilling to make an exception,

you can still seek out an independent pain mgmt MD or see a physiatrist

(also sometimes listed as 'physical medicine and rehabilitation " in some

insurance listings). Personally, I have never met a pain mgmt MD that I

liked. My experiences with every physiatrist I've seen has been very

positive. I also find that a physiatrist is more " wholistic " than just pain

mgmt. In my experience, pain mgmt just focuses on pain - period. My

experiences with physiatrists have found that they treat the whole

disability and its sequelae. Pain, disability, functionality, prevention of

secondary conditions that can arise from the condition, etc. Regardless of

who you choose to treat you, your comfort with them and their experience is

most important. As the long name of their specialty says, they focus on the

physical medicine (treating your pain, etc) and rehabilitation (making you

as functional as possible, whatever level that may be). My MD is monitors

just about everything regarding my disability and refers me as necessary

(PT, OT, surgeon, DME, other specialists such as urology and GI, etc). I

think of him as my PCP for disability.

Just because surgery is not an option (or a realistic option), as it isn't

for me unless something terribly drastic changes, they can still treat you

for the resulting disability and pain. After my last surgery, my MD referred

me back to my physiatrist, as any future surgery isn't really an option

(every surgery has made me worse, #3 resulting in T12 paraplegia). He

acknowledged that I still have problems, but as they are not surgical in

nature, he cannot treat them. But referred me to someone can help with the

remaining problems (if I had not already had a physiatrist, he would have

recommended one).

Best wishes,

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of Clement

Sent: Sunday, December 07, 2008 11:20 PM

To: tetheredspinalcord

Subject: Re: just another irritating thing with drs!

Thanks After reading my message again I can see I was a bit miffed LOL

Well, at this point I really dont care what they think anyway. I am tired of

hurting. I am thinking of adding Baclofen for the spasms....is it really

sedating? I think Dr. Oro's point is that if I cant have surgery there is

nothing he can do and it sounds like he is unwilling to put his name down on

fed biz based on symptoms. I am going through the free clinic here and

trying to get a referral to the Spina Bifida program at OU. Maybe at least

they can get me into pain management. Now it is just a waiting game. Wish I

had time to wait...am calling a Realtor about putting my house on the market

tomorrow

From: hollygolightly1916 <emaher1916@...

<mailto:emaher1916%40gmail.com> >

Subject: Re: just another irritating thing with drs!

To: tetheredspinalcord

<mailto:tetheredspinalcord%40yahoogroups.com>

Date: Sunday, December 7, 2008, 9:05 PM

" I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person.

All of this is really wearing on me and I finally gave in and saw a

Psych (now Dr's will really write it off as all in my head) but

between the pain and the losing everything I own, I was really

beginning to think it might be better just to not wake up one day.

So, now I have two lovely new meds that make me even more addled and

whenever I see a doc he will think I am nuts even more than they

already did. "

You will NOT be seen as a drug seeking crazy person if you chose to

take narcotic pain medication to ease/treat your current neuropathy.

That message my dear friend is " in your head " and it may feel that

way but it surely doesn't mean that you'll be perceived as an addict.

There are many people who chose narcotic pain med drug therapy to

treat their chronic pain condition. And I'm happy to hear you now

have someone neutral to " hear you out and listen " " and have a safe

place to vent. " This too DOES NOT mean you're crazy -- and I am so

deeply sorry to hear the neurosurgeon, Dr. Oro stated he cannot help

you. Did you try calling back and speaking with him directly to fnd

out why? It seems quite strange one minute he's happy to oblige and

now he's given you the door. Hmmmm. I have a feeling it may be due to

the SSA and him not wanting to involve himself in federal business. I

wouldn't give up on him entirely.

Am here and listening .. hoping this finds you feeling a bit better

about things. Hugs.

>

>

> Subject: just another irritating thing with drs!

> To: tetheredspinalcord@ yahoogroups. com

> Date: Friday, December 5, 2008, 3:10 AM

>

>

>

>

>

>

> Hello to all,as I sit and read your posts and see where many of u

as

> i have grown frustrated with drs reactions to our problems I have

to

> add a little something or maybe just vent.Which ever here goes-I

had

> my tc surgery in jan 2004 much complicated and was told I would be

> fine as many of the rest of you I am sure.Later on to find that I

> also have syringomyelia and arachnoitis but here is my beef-I am

> always told that my not being able to use/lift my arms has nothing

to

> do with my lower lumbar right?well then how come before they opened

> my spine and went into my spinal cord I could move my foot and lift

> my arms??and now I can't raise eyebrows or lip/mouth on rt side?but

> have been told it sounds like strokes but the brain mri's look

> fine...each episode of the paralysed usually on rt side is getting

> worse and i give up with the docs!I do know this-before I had surg

I

> could use my foot and I could lift my arms and they won't even

> consider the thought that the lower lumbar has nothing to do with

> your upper extremities! Go figure!!Anyway maybe some of u will find

> your answeres I now just place my faith in the man upstairs and try

> to keep my pain under control with my local dr who does understand

> thank God the pain anyway!and now hope u all have a goodnite and

> forgive me if I sound synical....Blessing s to you all,

> on oh maybe one day there will be drs that will listen to us

> and forget what the textbooks say!and just listen maybe just a lil

to

> us we can't all be crazy can we???

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Thanks Jenn...my appt with the free clinic is the 16th so maybe I will know more

then.

From: hollygolightly1916 <emaher1916gmail (DOT) com

<mailto:emaher1916% 40gmail.com> >

Subject: Re: just another irritating thing with drs!

To: tetheredspinalcord@ yahoogroups. com

<mailto:tetheredspi nalcord%40yahoog roups.com>

Date: Sunday, December 7, 2008, 9:05 PM

" I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person.

All of this is really wearing on me and I finally gave in and saw a

Psych (now Dr's will really write it off as all in my head) but

between the pain and the losing everything I own, I was really

beginning to think it might be better just to not wake up one day.

So, now I have two lovely new meds that make me even more addled and

whenever I see a doc he will think I am nuts even more than they

already did. "

You will NOT be seen as a drug seeking crazy person if you chose to

take narcotic pain medication to ease/treat your current neuropathy.

That message my dear friend is " in your head " and it may feel that

way but it surely doesn't mean that you'll be perceived as an addict.

There are many people who chose narcotic pain med drug therapy to

treat their chronic pain condition. And I'm happy to hear you now

have someone neutral to " hear you out and listen " " and have a safe

place to vent. " This too DOES NOT mean you're crazy -- and I am so

deeply sorry to hear the neurosurgeon, Dr. Oro stated he cannot help

you. Did you try calling back and speaking with him directly to fnd

out why? It seems quite strange one minute he's happy to oblige and

now he's given you the door. Hmmmm. I have a feeling it may be due to

the SSA and him not wanting to involve himself in federal business. I

wouldn't give up on him entirely.

Am here and listening .. hoping this finds you feeling a bit better

about things. Hugs.

>

>

> Subject: just another irritating thing with drs!

> To: tetheredspinalcord@ yahoogroups. com

> Date: Friday, December 5, 2008, 3:10 AM

>

>

>

>

>

>

> Hello to all,as I sit and read your posts and see where many of u

as

> i have grown frustrated with drs reactions to our problems I have

to

> add a little something or maybe just vent.Which ever here goes-I

had

> my tc surgery in jan 2004 much complicated and was told I would be

> fine as many of the rest of you I am sure.Later on to find that I

> also have syringomyelia and arachnoitis but here is my beef-I am

> always told that my not being able to use/lift my arms has nothing

to

> do with my lower lumbar right?well then how come before they opened

> my spine and went into my spinal cord I could move my foot and lift

> my arms??and now I can't raise eyebrows or lip/mouth on rt side?but

> have been told it sounds like strokes but the brain mri's look

> fine...each episode of the paralysed usually on rt side is getting

> worse and i give up with the docs!I do know this-before I had surg

I

> could use my foot and I could lift my arms and they won't even

> consider the thought that the lower lumbar has nothing to do with

> your upper extremities! Go figure!!Anyway maybe some of u will find

> your answeres I now just place my faith in the man upstairs and try

> to keep my pain under control with my local dr who does understand

> thank God the pain anyway!and now hope u all have a goodnite and

> forgive me if I sound synical....Blessing s to you all,

> on oh maybe one day there will be drs that will listen to us

> and forget what the textbooks say!and just listen maybe just a lil

to

> us we can't all be crazy can we???

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

THE DR. 'S @ TCI ARE REALLY STARTING TO BUG ME.

LISA LEWIS

[Guest guest]

I can't agree with you more. I use narcotic pain meds and have for more than

5 years now (and probably getting closer to 10 now). Do not worry about

becoming addicted or being viewed as an addict. After a period of time

taking narcotic meds daily, your body will develop a dependence on them. If

you were to stop taking them all of a sudden, you would experience

withdrawal symptoms. But that does not mean you are an addict (needing NA).

People who take narcotics for pain control - legitimate pain control, just

take the amount necessary to control their pain, and that's it. I think for

most of us, if drinking milk would control our pain and we would no longer

need the meds, we'd be more than happy to do so. Its possible that some

people will have the incorrect idea that you are an addict who could stop

using them if you wanted, but some of those people, there's just nothing you

can do for them.

Jenn

From: tetheredspinalcord

[mailto:tetheredspinalcord ] On Behalf Of hollygolightly1916

Sent: Sunday, December 07, 2008 4:06 PM

To: tetheredspinalcord

Subject: Re: just another irritating thing with drs!

" I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person.

All of this is really wearing on me and I finally gave in and saw a

Psych (now Dr's will really write it off as all in my head) but

between the pain and the losing everything I own, I was really

beginning to think it might be better just to not wake up one day.

So, now I have two lovely new meds that make me even more addled and

whenever I see a doc he will think I am nuts even more than they

already did. "

You will NOT be seen as a drug seeking crazy person if you chose to

take narcotic pain medication to ease/treat your current neuropathy.

That message my dear friend is " in your head " and it may feel that

way but it surely doesn't mean that you'll be perceived as an addict.

There are many people who chose narcotic pain med drug therapy to

treat their chronic pain condition. And I'm happy to hear you now

have someone neutral to " hear you out and listen " " and have a safe

place to vent. " This too DOES NOT mean you're crazy -- and I am so

deeply sorry to hear the neurosurgeon, Dr. Oro stated he cannot help

you. Did you try calling back and speaking with him directly to fnd

out why? It seems quite strange one minute he's happy to oblige and

now he's given you the door. Hmmmm. I have a feeling it may be due to

the SSA and him not wanting to involve himself in federal business. I

wouldn't give up on him entirely.

Am here and listening .. hoping this finds you feeling a bit better

about things. Hugs.

[Guest guest]

Thanks Jenn...what do you use? I have been given Lortab 10 in the past but it

didnt help the nerve pain at all. That is why I am considering some type of

nerve procedure....

Subject: RE: just another irritating thing with drs!

To: tetheredspinalcord

Date: Wednesday, December 17, 2008, 11:19 AM

I can't agree with you more. I use narcotic pain meds and have for more than

5 years now (and probably getting closer to 10 now). Do not worry about

becoming addicted or being viewed as an addict. After a period of time

taking narcotic meds daily, your body will develop a dependence on them. If

you were to stop taking them all of a sudden, you would experience

withdrawal symptoms. But that does not mean you are an addict (needing NA).

People who take narcotics for pain control - legitimate pain control, just

take the amount necessary to control their pain, and that's it. I think for

most of us, if drinking milk would control our pain and we would no longer

need the meds, we'd be more than happy to do so. Its possible that some

people will have the incorrect idea that you are an addict who could stop

using them if you wanted, but some of those people, there's just nothing you

can do for them.

Jenn

From: tetheredspinalcord@ yahoogroups. com

[mailto:tetheredspinalcord@ yahoogroups. com] On Behalf Of hollygolightly1916

Sent: Sunday, December 07, 2008 4:06 PM

To: tetheredspinalcord@ yahoogroups. com

Subject: Re: just another irritating thing with drs!

" I have and continue to endure pain because I know that once I give

in and take narcotics I will be seen as a drug seeking crazy person.

All of this is really wearing on me and I finally gave in and saw a

Psych (now Dr's will really write it off as all in my head) but

between the pain and the losing everything I own, I was really

beginning to think it might be better just to not wake up one day.

So, now I have two lovely new meds that make me even more addled and

whenever I see a doc he will think I am nuts even more than they

already did. "

You will NOT be seen as a drug seeking crazy person if you chose to

take narcotic pain medication to ease/treat your current neuropathy.

That message my dear friend is " in your head " and it may feel that

way but it surely doesn't mean that you'll be perceived as an addict.

There are many people who chose narcotic pain med drug therapy to

treat their chronic pain condition. And I'm happy to hear you now

have someone neutral to " hear you out and listen " " and have a safe

place to vent. " This too DOES NOT mean you're crazy -- and I am so

deeply sorry to hear the neurosurgeon, Dr. Oro stated he cannot help

you. Did you try calling back and speaking with him directly to fnd

out why? It seems quite strange one minute he's happy to oblige and

now he's given you the door. Hmmmm. I have a feeling it may be due to

the SSA and him not wanting to involve himself in federal business. I

wouldn't give up on him entirely.

Am here and listening .. hoping this finds you feeling a bit better

about things. Hugs.